Patients, families use blogs to cope with cancer

Not long after 4-year-old Ari Mabry was diagnosed with leukemia in 2006, his mother Johanna started a Web page to update family and friends. It was a tool -- a way to keep phone calls to a minimum, a way to ask for help.

Since then, it has evolved into a daily journal about life as it is for the Mabry family. And life for the Mabrys is filled with challenges: Ari continues a three-and-a-half-year cancer treatment regimen. Baby sister Eliana was born in April with serious birth defects -- the effects of which are still unclear. And middle child Hunter struggles with what it means to be a sibling to a brother and sister with serious medical problems.

"It has really been a way for me to feel heard. Not necessarily understood, because not everyone can understand what we go through, but to be heard," Johanna Mabry said. "I'm not exaggerating when I'm saying this: The CarePage is like a lifeline for me."

Cancer patients and caregivers are increasingly using blogs -- short for Web logs -- as an emotional outlet and practical resource. Wondering if you should launch one? Here are eight reasons to consider it.

8 Reasons to Blog

1. Inform Family and Friends.

Talking to family and friends about what you're going through can be draining -- especially if you have to repeat your story over and over. That's why the University of Michigan Comprehensive Cancer Center offers CarePages, a free Web service that allows you to post updates. The Web site features privacy controls so you can decide who you want to see your site. Rather than fielding phone calls, you or your caregiver can post to your CarePage, which automatically generates an e-mail to people you've approved to view the site. Posts can be made anytime -- even late at night, which can be nice for parents who don't want to talk about scary stuff in front of children. It also has its benefits for family and friends, said Jane Bailey, a CarePages user who has lung cancer.

"Everyone who has used it thinks it's awesome," Bailey said. "People want to know how you are, but they're afraid to bother you."

2. Writing: It's good for you.

Researchers are just beginning to study the effects of blogging on cancer patients' wellbeing, but we know that writing about emotional experiences has its benefits. Early research has shown that some types of immune system function improve after writing. Participants in a study published in Psychological Science also reported long-term improvement in mood and well-being, despite initial pain related to writing about upsetting experiences.

Ed Chacon-Lontin, whose stage IV non-Hodgkin's lymphoma is in remission, said he's found writing to be an emotional release. He started a blog in July and also works with the Cancer Center's Creative Writing Program.

"Sometimes I'm on top of this stuff and sometimes it's on top of me," he said, referring to the anxiety and pressure cancer brings to his life. "And I also have a family and all that regular stuff. Writing helps me move through it. I write my way through y challenging places. It's a passion for me."

3. Set the tone.

There are lots of reasons to write a blog, regardless of whether you have writing aspirations. But if you are interested in writing, take a look at this site on what makes for a good blog.

A lot of people don't know how to talk about cancer. A blog gives you the chance to set the tone of your conversation about cancer and let people know where you're coming from. It can help them understand that you are still you: You have scary times and funny times. You find insight into life one day, but the next day life just sucks. By sharing your experience, it may help to shoo the elephant out of the room next time your friends call to say hi.

4. Get rid of your guilt.

It can be difficult to say no, but you have to when you're managing life with a cancer diagnosis. For Mabry, it's still difficult to accept she can't do things like bring a crockpot full of food to a friend whose father is in the hospital.

"I can post about how paralyzing it can feel to be in this situation and maybe people will get that," she said. "People can forgive me for things that they may not otherwise understand because they don't have the backstory."

5. Get a virtual pat on the back.

Sometimes you can use a boost. Blogs offer readers the opportunity to post comments in response to your posts. Bailey said she's received about 500 messages since she launched her CarePage in March. Sometimes they're messages of encouragement, but other times, they're just good laughs.

6. Document your experience.

This is a life-altering moment for you. It could be something you wish to document, particularly if you have young children who may want to learn more about it when they're older. If you're not sure you're ready to share your experience with other people, make your blog completely private and treat it as an online journal.

7. No experience necessary.

Mabry never felt confident in her writing. As a certified art therapist, she always considered herself a more visual person. But CarePages has changed that.

"It's interesting to write on my CarePage and not really care what my writing is like from a grammar perspective," she said. "I talk about what life is about and I don't really care about the grammar. It's funny, though; I get a lot of feedback that I'm an eloquent writer."

8. It's free.

Who doesn't like free stuff? Several services provide free blogging. WordPress and Blogger are among the most popular. Just be sure to check your privacy settings to be sure you're not sharing more than you want to. Chacon-Lontin uses a pseudonym and is careful not to post anything that would allow strangers to identify himself or his family. CarePages, offered through the Cancer Center, is designed specifically for patients and families. For more information about this service, stop by the Patient & Family Lounge, on Level 1, or the Patient Education Resource Center, on Level B-1, or call 734-615-5216.

Interested in checking out what other people with cancer are blogging about? Here are our picks to get started.

If you find a blog you enjoy, consider subscribing to it. Some blogs feature "RSS feeds," which automatically send new posts to a "feed reader" site. That way, you can monitor several blogs without going back to each blog individually. Popular reader sites are available through Google and Yahoo. Learn more about RSS feeds and readers.

Flor Y CantoEd Chacon-Lontin, who receives treatment for non-Hodgkin's lymphoma at the University of Michigan Comprehensive Cancer Center, takes a creative approach to essays on the more spiritual aspects of coping with cancer.

Kathy-Ellen's Breast Cancer BlogKathy-Ellen Kups is a Michigan-based blogger who writes about what life has been like since she was diagnosed with breast cancer in 2003. She has been cancer-free since 2004.

My CancerFor two years, television producer Leroy Sievers collaborated with National Public Radio to offer one of the most well-known and eloquent blogs about cancer. Please note that Sievers died in August 2008 and that his wife continues to write about her grieving experience. These posts may be upsetting to someone currently in cancer treatment. NPR maintains a full archive of the blog, dating to its start in 2006.

Heidi's Hot FlashesA blog by Heidi Adams, founder and executive director of Planet Cancer, a Web site dedicated to young people who have cancer. It trends toward a younger audience and features interesting advocacy messages as well.

Killing Cancer Day by DayHeather Jose, a breast cancer patient who received treatment at the University of Michigan Comprehensive Cancer Center, writes a regular blog for MLive.com. She is also the author of "Letters to Sydney: Every Day I Am Killing Cancer."

Do you have a favorite cancer blog? Tell us about it email: thrive@med.umich.edu. We'll post your picks here.